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Nicholas and I are back in Washington. We arrived last night and according to him had a bit of a harrowing drive from the airport to our dear friends home in the rain. I guess he’s not too wrong. Driving in the dark, in less than familiar surroundings, is a little hard for me. Add rain and… harrowing? Maybe so.

The rest of our journey was easy peasy. Lots of time for chatting and reflection. While going through security at JFK to pass the time I asked Nick if he had his ExoSym already and he could go anywhere where would he want to go and he said “home” and I asked “why” and he said “to take a nap”. So we have established that he was tired.

So I amended my question and said the nap would come first at any destination and he still said “home”. And now I was frustrated.

Me: “You’ve got to be kidding me”

Nick: “I want to go home, nap and go for a walk in the Arden Woods.”

Ahhh… this make sense to me. Something he can’t really do now or at least not do comfortably. This I get and this touched my heart. I want to do the same exact thing when we get home.

Today he started using his ExoSym and it was a pain in the ass… Yes a pain in the ass and that seemed like good news to me right away. Nick was using some muscles much more than he had before. The brace and the process are both simpler and more complex than I thought. I don’t have the brain power left to share all we learned today but I will. I promise. For now just know that while it was a pain in the ass it was not a pain anywhere else and Nick is doing remarkably well with his functional training which will go on for quite some time. He wont experience the full effect of the device for possibly 6 months. There will be a lot of work involved. I call it Miracle Work and I will elaborate next time.

A few weeks ago Nicholas had a gait analysis at A.I. duPont. It was actually a pretty fun Friday for him and his siblings. I can’t share pics because Nick in short shorts is not meant for the internet but the whole thing was so interesting. I suggested they rent the place out for parties. The gentleman who did the study let the sibs try out some fun stuff. I never think going anywhere in a hospital with four children will be easy but it was easy and funny and pretty painless for Nick except he lost some hair getting sticky things taken off after. All the circles on the figure above represent a sticky thing. It all comes back to bandages and tape. #whatFHmomsknow

The image above was given to us on our way out. The complete results of the study take weeks. I so love science and data and as impressed as I was with the whole thing I was not so happy to see this image.

Nick is still bearing weight primarily in the same place he did before he had 3 screws put in his foot.

This study was done after we went to Gig Harbor to get Nicholas fitted for the ExoSym. I am glad we had done so already because I feel this points to the fact that we need non surgical solutions now. The surgical ones just are not cutting it, despite a lot of cutting! Ha! Nick found that quite funny.

I am trying to take the insurance bit of the ExoSym process in stride. Cigna has not completed a preauthorization yet and may not ever. We just have to go and see what happens. This is potentially super nerve wracking as this brace will cost over $10,000. It’s really not just a brace though. It’s Nick having a prosthetic and keeping his foot. It also has a knee component that will be vital. I am understanding this issues Nick’s knee has more and more as Nick works with Reenee his physical therapist extraordinaire.

Yet again I find myself in a situation in which I have had to commit not to let money decide my sons fate. I really wont. It’s not fair to him. On Halloween my boy will get his ExoSym and he will create a whole new set of foot prints and follow the trail blazed by Zak Green and hopefully many kids with fibular hemimelia to come.

Heard back from the RIAO 2x today. Apparently there are several things that can cause foot pain in “normal” feet in children and most are benign. Great news!

But today the foot pain was 100% gone. Nick walked around all day and then did his hour of swimming. He goes back to the Dr. Standard next month and since the pain is gone I see no reason to go see him sooner. At the next appointment I do plan on asking what are some of the benign things that can cause pain so I panic a little less next time.

I suppose I am lucky my kids have not had a lot of normal kid pains. Nick had the normal kid arm breaking last summer but all other pains have been related to fibular hemimelia I think. And aside from surgery induced pain my boy has rarely been in pain. (PLEASE LET THIS POST NOT SERVE AS A JINX OF SOME KIND).

Dancing on screen at the Delaware Children’s Museum

Since Nicholas was feeling better we made up for being in a lot yesterday by being out a lot today! The Delaware Children’s Museum is an activity filled place and my kids tried everything!

Even though Nick was a little big for those carts he did great! After the museum we went to a Greek Festival and had dinner and then there was swimming. Not the kid of day a kid in pain would enjoy. Thankfully ‘kid in pain’ is so not my kid! I feel awful for anyone who has to suffer and I feel for parents whose children have pain that cant easily be eliminated.

Pain and fh will be explored in my next post which I have been considering writing for a while now. For now I am happy to have a house full of tired and/or sleeping children! Nothing like a day out on their feet to wear them out!